Pelvic Pain Support Network
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Care plans anyone?!

Hi, im new here. My Name is Ellie and i'm a 21 year old young woman that's had Interstitial Cystitis since I was 13, I also think I have fibromyalgia but that's never been officially diagnosed. However, I am finding it incredibly difficult and frustrating to seek care for the list of symptoms that at times can be as long as my arm. Has anyone had any success in getting their GPs to formulate some kind of care plan? My most important meds are antiemetics and pain relief (I haven't had a single day when I haven't thrown up since July), obviously once you're throwing up, any orally administered meds are useless and I'm also unable to know how much of the dose has actually been absorbed so I can't take anything else - so over time I end up in such a state that I'm hospitalised for days to weeks. Yesterday I spoke to one of the docs at the GP to discuss this in a roundabout way and he actually outright told me that I should NOT seek help/treatment as these symptoms are longstanding and they have found little to no evidence of a physiological reason for them therefore I shouldn't try and treat them (Not the first not the last to say it). I also have severe anxiety and depression, half from feeling poorly for so long, half from just having a wonky brain. Therefore this whole situation now is pushing me closer and closer to the edge. Please can anyone point me in the right direction.

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Have you tried the fentanyl patch for your pain? Also, that is scary that you get sick every day. My friend's brother was sick like that every day for 3 years and became near suicidal. Thankfully, the sickness, whatever it was, stopped and he's completely better. You should keep interviewing different doctors until you find the right one. It seems to take me at least 3 or 5 tries before I find a decent doctor in each area.


Hi, I wouldn't listen to a doctor who tells you to give up! You need a Gastroentrologist, maybe at a university. Doctors who tell you to give up are useless & clueless. I'm sure there is an explanation for your problems. Start doing your own research, & you'll find a doctor who can help you. Have you looked for a group on the internet? They can help you find a knowledgeable doctor who deals in your problem.


They flat out refuse to give me things like that. I've actually been told to my face that those are for cancer patients and cancer patients only. Shall ask again once I find a doc that wants to help, just takes so long to find a new doc and I'm right in the middle of a flare up of most of my symptoms.


Everyday, I say I am not going to come back to this site because I have received treatment and now it's time to move forward. But, then I see the posts in my email and look at the ages of people looking for help and it breaks my heart. As I heal I realize the most important piece of the puzzle is too relax the pelvis.How do you relax the pelvis if you are in pain?

When you say you may have fibromyalgia I think this is what I thought I may have as well prior to surgery. I was feeling pain in different areas of my body. My nervous system could not calm down and my blood pressure rose and I was sweating. Post surgery 8 weeks I am doing belly breathing and postural exercises. I am not sure if this would help you but it is worth a shot. I am doing 10 minutes a day from the site. I mentioned this to other people on this forumn. It is helping me. I was a chest breather prior to doing these exercises . Now I breathe from my abdomen and my pelvis is relaxed. When I work I would hunch over and tighten my pelvis and I was doing kegel a couple years ago. I believe this worked against me. I noticed when I sat down to eat I didn't have good posture and would hunch forward. So a lot of pressure on the organs. All my exercise I would tighten my pelvis, especially planks(lots of downward pressure, not good). So, I probably never relaxed until bedtime. In one week I have the arch in my back , the abdomen forward, arms relaxed by my side, my chest up and chin slightly down, and feet firmly planted on the floor. I was in rough shape no less than 8 weeks ago with two neuromas from a previous surgery. Don't wait for the doctors to solve this . You are young. Drink lots of water, clean diet, and good exercise program. Look at my prior posts. You need to smile again. I am smiling now!

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